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ALD is Added to the Recommended Uniform Screening Panel (RUSP)!

February 19, 2016 by Brian's Hope

On February 17th, 2016, the Secretary of the Department of Health & Human Services, Silvia Burwell, approved the addition of adrenoleukodystrophy (ALD) to the Recommended Uniform Screening Panel (RUSP), the federal list of genetic diseases recommended for state newborn screening programs. The addition of ALD to the RUSP will expedite the process of adding ALD …Read More

Filed Under: Brian's Hope News, In the News..., Progress of Newborn Screening, Support, Thank You for the Support

Join the Movement and #SaveTheBoys with Brian’s Hope

August 20, 2015 by Brian's Hope

Every 36 hours, a newborn baby is born with adrenoleukodystrophy, also known as ALD. ALD is a genetic disease that attacks the brain and can cause blindness, deafness, loss of muscle control or even death. If detected early, ALD can be treated; however currently there is no mandatory screening for this disease. Join Brian’s Hope …Read More

Filed Under: Brian's Hope News, In the News..., Progress of Newborn Screening, Support

Golf Tournament Benefiting Branford Lions Club & Brian’s Hope

May 6, 2014 by Brian's Hope

The Branford Lions Club is pleased to announce that they have once again adopted Brian’s Hope in a Charitable Golf Event on June 4th. The Lions are very excited to be able to support Brian’s Hope in its mission to stop the progression of adrenoleukodystrophy (ALD). Proceeds from the event will be shared by both …Read More

Filed Under: Branford Lions Golf, Brian's Hope News, Donate, Support, Volunteer

Discussing Newborn Screening with Fifth Graders at Green Acres School in North Haven

November 6, 2013 by Brian's Hope

We had a great day with Mrs. Savoia and Mrs. Schingh’s fifth graders at Green Acres School in North Haven, discussing the passage of our bill and the importance of newborn screening, and the addition of ALD to the existing newborn screening panel.

Filed Under: Brian's Hope News, Support

17th Annual Hammerfest Triathlon and Fun Run

May 1, 2013 by Brian's Hope

It’s that time again! The 17th Annual Hammerfest Triathlon and Fun Run to benefit Brian’s Hope will take place Sunday, September 15th, 2013 at the Owenego Inn on Linden Avenue in Branford. Register online at Active.com or download the application(s) below, which include directions on registration, pricing and where to send your check. Below is …Read More

Filed Under: Brian's Hope News, Hammerfest Triathlon, Support

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Updates

Latest News on ALD

Recent Posts

  • FDA Grants Breakthrough Therapy Designation to Lenti-D™ for the Treatment of Cerebral Adrenoleukodystrophy May 24, 2018
  • California Begins Newborn Screening for ALD October 3, 2016
  • 20th Annual Hammerfest was an Amazing Success October 3, 2016
  • Press Conference on ALD Newborn Screening Success Held in Connecticut September 2, 2016

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